by Marvin F. Kraushar, Vito J. DeSantis, James A. Kutsch Jr.,
Gaytha I. Kraushar, and Joseph J. Ruffalo
From the Editor: In May 2010 a version of the following article was published in the American Journal of Ophthalmology. Its message is important for physicians with blind patients to read and consider. It was couched in the language of medicine. We also thought it might be helpful to Monitor readers who themselves deal with members of the medical community, so we asked permission to republish the text somewhat recast in lay people’s language. The authors gave us permission. They are Dr. Marvin Kraushar of the Department of Ophthalmology, University of Medicine and Dentistry of New Jersey; Vinto DeSantis and Gatha Kraushar from the New Jersey Commission for the Blind and Visually Impaired; James Kutsch of the Seeing Eye; and Joseph Ruffalo, president of the National Federation of the Blind of New Jersey. Here it is:
When there is no effective treatment for a vision-damaging ocular condition or when treatment fails to prevent or restore vision loss, patients may experience blindness. Less severely affected patients may experience visual impairment. Depending on the patient, age at onset, personal and occupational goals may be altered or abandoned. Blind or visually impaired (VI) people under sixty-five often do not receive maximum vision rehabilitation. Only 41.5% of the blind population is employed. A second, smaller group are patients over sixty-five. With improvements in the management of extremely premature newborns and the increasing longevity of the population, both groups can be expected to grow significantly in the future. Many people in both groups spend their days sequestered in their homes or group facilities. Others may cope with their situations by setting unnecessarily limited goals.
But alternative, nonvisual skills are available to blind and VI people of all ages seeking higher education or attaining or maintaining competitive careers. These include orientation and mobility, Braille skills, and competence in technologies that improve communication and broaden access to information. No statistics are available demonstrating the impact of these skills on the individual’s ability to enter or remain in the workforce. Years of experience, however, have shown that the most motivated blind and VI people who have access to these skills achieve or maintain integration in their communities and retain the ability to compete with their sighted peers for higher education and employment. For them reading, writing, and communicating at the level of the sighted population are an absolute necessity and an attainable goal.
Low-vision aids are not an option for blind people who have little or no useful vision. While such equipment can be invaluable to visually impaired people when performing everyday tasks, reading ten to thirty words a minute with magnifiers or closed-circuit television systems is slow and insufficient for those intending to attain or maintain lives as satisfying and meaningful as those of their sighted neighbors.
Both patients under and over sixty-five are often told by their physicians, "There is nothing more I can do for you." While this statement may be medically accurate, a very real psychological benefit is associated with doing something that can provide desperately needed hope to these patients. The ability of ophthalmologists to provide information about the availability of vision rehabilitation services, specifically nonvisual skills acquisition, and to encourage patients to make use of such services can have a profound impact on their independence and productivity.
To increase independence, public and private agencies teach blind people orientation and mobility with the long cane and adaptive daily living skills such as personal grooming, dressing, grocery shopping, homemaking, and kitchen skills. It is generally recognized today that effective use of the long white cane or guide dog makes independent travel possible.
Such agencies also provide Braille skills and training in assistive technologies to blind and VI people, enabling many to communicate as effectively as the sighted. Braille is currently read by only 10 percent of blind people, but of those, approximately 90 percent are employed. This compares with only 30 to 40 percent of Braille nonreaders. Moreover, thirty percent of Braille readers have advanced degrees. Common myths about Braille include the following: only young children can learn Braille; Braille is too slow; it is a poor substitute for print reading; and Braille materials are not readily available. None of these statements is true. Although scientific data are not available, many blind and VI individuals of all ages have learned Braille and can read as fast as sighted people and with the same level of comprehension.
Recent innovations in assistive technology have dramatically increased opportunities for blind and VI people to compete successfully. Screen readers use software to read the information on the computer screen aloud. Other devices produce embossed or refreshable Braille. In addition to providing the portable document management, calendar, and other functions of a PDA, electronic notetakers provide access to email and the Internet through speech and Braille output. Jobs that had previously been beyond the reach of blind or VI employees—such as executive positions and jobs in information technology, medical transcription, and teaching, for example—are now open to blind and VI people with adaptive technology skills.
Most nonmedical people—even many ophthalmologists—do not know any truly independent blind or VI people and therefore harbor misconceptions about blindness. The sighted public's fear of blindness is exacerbated by people’s ability to close their eyes. They immediately panic and think, "How can I do anything without vision?" Sighted people unfamiliar with the independence afforded by nonvisual skills have low expectations for blind and visually impaired people. Understandably, people who have lost their sight and who don’t know the benefits and availability of nonvisual skills harbor these same misconceptions and low expectations of themselves.
Ophthalmologists naturally concentrate on stabilizing vision and maximizing remaining vision with emphasis on visual acuity rather than on visual function. They define blindness as 20/200 or less in the better eye and visual impairment as less than 20/40 in the better eye. Medical personnel often advise their patients of all ages to use their remaining vision, usually by employing low-vision aids. For blind people especially, emphasizing unreliable vision fosters dependence rather than independence.
If this unhealthy and unconstructive situation is to be reversed, physicians must stop thinking of vision loss as a deficiency and begin understanding what is possible. Thinking of capabilities instead of disabilities emphasizes strength and opportunity instead of weakness and limitation. Don't think, "Without a guide dog or a cane Mr. Jones cannot travel." Think, "With a dog guide or a cane Mr. Jones can travel." Blindness skills then become liberating rather than restricting.
Physicians must also understand what can be accomplished with nonvisual skills and learn where their patients can acquire them. The National Council of State Agencies for the Blind (NCSAB) maintains a continually updated Website, <www.ncsab.org>, which lists the state agencies serving blind and VI consumers in all fifty states. A link for physicians at this Website facilitates access to this information. Vision Serve Alliance, found on the Web at <www.visionservealliance.org>, is maintained by a similar organization of private agencies serving people losing vision. We urge ophthalmologists to make this information available to their blind and VI patients and encourage them to investigate the services that can enhance their quality of life.
Motivated blind and VI people who learn nonvisual skills and are encouraged to make use of them can achieve independence, self-esteem, and productivity. However, as valuable as assistive technology and nonvisual skills are, Braille, the computer, the guide dog, and the cane can only give the person effective tools. The individual's positive attitude and ability will make him or her successful. The ophthalmologist has a responsibility and a unique opportunity to educate these patients. In the ancillary role of counselor and advisor, the ophthalmologist who has nurtured the physician-patient relationship can influence whether someone takes the first step toward attaining or retaining personal success.